Op-ed: Watching Mom go and sharing the story

MY mother had the most amazing skin. Her arms were alabaster white, completely unblemished, with a subtle luminescence, like the china she carefully kept, but never used. Now, the nurse explains to me, her “skin organ is failing.” Her hue is the yellow of jaundice.

As I write this, my mother lies dying next to me. It feels as if it’s been an excruciatingly long journey to this small room, where my father and I are keeping vigil by her bedside. Time seems to operate differently here; even the space between breaths can seem like an eternity.

Seven months ago my parents were independent, managing their own affairs. Then the cancer diagnosis came. We moved quickly from hopes for a recovery, to hopes for a few more years, to hopes for a comfortable end of life.

Certainly I’ve seen many people go through this, but those events have always seemed so discreet. One day an email arrives, or a Facebook post. I write a card or post a comment, perhaps attend a funeral, and move on. I’m ashamed I didn’t know more about what they endured: both the ones who passed, and the ones who cared for them.

I’ve spent my life on storytelling, yet I’ve somehow missed these stories. It’s tempting to blame the culture at large: I don’t see tweets about hospice. But I prefer to look inward. Why haven’t I asked more? I have so many tools for communication, and yet for death, I have almost no context. Nothing that resembles reality.

Our reality is this: Caregivers check on mom around the clock; a hospice team comes almost daily. Evangelists from my parents’ church bring food and pray. Every day I make dozens of little decisions designed to ease my mother’s transition to the next world. It’s a job I feel woefully ill-equipped to handle.

I didn’t know the signs of impending death, the interrupted breathing, the sallow skin, the inability to swallow. The bluish tint of the feet and fingers. The confusion. I don’t know the medical reasons for any of these things. But each one has a wrenching effect on the witnesses.

Perhaps most trying has been “the rebound.” Right before the end, some friends said, you’ll see her regain strength, energy. You dare to hope, and then it’s over.

This did in fact happen, but in a way that surprised even the professionals. She was so close her doctor gave her no more than a few hours. But she didn’t die. A few days later, she woke up. She could move, talk, laugh a little. She even wanted a haircut. We all thought it was a small miracle.

One of the hospice people, from West Africa, says almost everyone has stories like this, but we rarely share them. We speak all the time, but we don’t talk.

Mom’s speech is gone now; she communicates almost entirely with her eyes. I can still feel her saying she loves me. But she also seems to be looking beyond me, into the world she almost entered. The only other time I’ve seen an expression like that was in the face of my newborn daughter, the first time she opened her eyes.

When mom came back, I asked her what she saw. “Angels,” she said, in a way that made me think she could see them still. I’m not a religious person, but I have no doubt. I believe that as surely as I am sitting next to her, she is mostly somewhere else right now. She is free. And the angels are there with her, guiding her home.